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Reply | Forward Message #122 of 612 |
NEW SD Federation

thought i'd pass this along to you...<br><br>The
Scleroderma Federation was launched June 28, 2000, by the
group formerly known as<br>the Scleroderma Foundation
Minnesota Chapter. <br> <br>The Scleroderma Federation
(ScleroFed) offers hope and help for scleroderma patients and
their<br>caregivers. We primarily serve our Minnesota home base but
will also offer some outreach<br>services nationally
and internationally to our individual members and
allied groups with: <br> <br>• Internet support via
email<br>• Brochures and literature<br>• Online scleroderma
bookstore <br>• The Scleroderma Star newsletter<br> <br>Our
brand new (still under construction) web site is at
<a href=http://www.sclerofed.org target=new>http://www.sclerofed.org</a> <br>
<br>Warm Hugs,<br> <br>Shelley Ensz,
President<br>Scleroderma Federation<br>7400 Metro Blvd, Suite
100<br>Edina, MN 55439<br>Toll Free Hotline
1-877-794-0347<br><a href=http://www.sclerofed.org
target=new>http://www.sclerofed.org</a> <br>Email:shelley@...




Fri Jun 30, 2000 1:07 pm

blue-eyes-1012
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Message #122 of 612 |
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hi blue eyes<br>evenings are better for me or ant yime on mondays can't wait til the chat gets started....
Beanie_1959
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Jun 25, 2000
5:53 pm

thought i'd pass this along to you...<br><br>The Scleroderma Federation was launched June 28, 2000, by the group formerly known as<br>the Scleroderma...
blue-eyes-1012
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Jun 30, 2000
1:07 pm

Just wanted to let everyone know the story ahout Bob Sagot's sister is on again Monday night check your local listings. This is a very good movie as I havs...
Beanie_1959
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Jul 8, 2000
8:39 pm

here's an inside scoop....just recieved in an e-mail...<br><br>&lt;This is a reminder that the ABC TV movie "For Hope" will be re-aired on Monday night, July...
blue-eyes-1012
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Jul 9, 2000
2:40 pm

<a href=http://dailynews.yahoo.com/h/ap/20000709/hl/exp_fitness_women_1.html...
alby40
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Jul 9, 2000
8:55 pm

Folks, I _have_ seen the movie (have a tape, too) and it can be quite frightening if you don't have a full understanding of the variability of scleroderma. I...
alby40
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Jul 9, 2000
9:13 pm

I believe Ronni and friends will have their usual AOL scleroderma chat (10:00P EDT in the Better Health area of AOL - AOL members only) on Monday, which would ...
alby40
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Jul 9, 2000
9:17 pm

I have also seen the movie and didn't mean to offend anyone or scare them. However I have lived this night mare....
Beanie_1959
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Jul 9, 2000
9:23 pm

Glad to see you're beating it!...
alby40
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Jul 9, 2000
9:32 pm

i wanted to stress that same point...i have also seen the movie...adn remember my first thoughts...i saw the movie the last ttime it was on, adn it wasn't ...
blue-eyes-1012
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Jul 10, 2000
2:25 pm

Don't forget we will be chatting here tomorrow about the movie, or anyhting else you'd like to talk about at 2 pm EDT and 5 pm EDT...sorry...will not be able...
blue-eyes-1012
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Jul 10, 2000
2:32 pm

missed all of you at 2 PM....leave a message about what you thought of the movie....questions...or comments......
blue-eyes-1012
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Jul 11, 2000
6:13 pm

alby40:<br><br>Thank you for your balanced email in response to concerns about the movie. My partner Michelle has<br>been recently diagnosed with systemic ...
theo_trish
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Jul 11, 2000
10:34 pm

Sorry I missed you all at chat. The movie wasn't as I remembered it. To all of you who have Scleraderma hang in there,and to those of you who have a loved one...
Beanie_1959
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Jul 11, 2000
11:23 pm

LOL - that acutally may be the best way for a newbie to watch that movie. To be honest,parts of it still got to me, like when Hope was finally diagnosed....
alby40
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Jul 11, 2000
11:40 pm

I have to agree with alby40 this disease stinks.In my opinion it is the most horrible one out there I think it ranks right up there with aids....
Beanie_1959
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Jul 12, 2000
12:17 pm

parts go to me too...even though my mom has the external aspect only...knock on wood....so far....for 16 years. i was crying lots....even knowing all i ...
blue-eyes-1012
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Jul 12, 2000
1:59 pm

but that's why we're here...we need to keep fighting ...for ourselves...and our family members....we<br> need to do all we can to stay on top of things...on...
blue-eyes-1012
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Jul 12, 2000
2:04 pm

hang in there blue eyes...
Beanie_1959
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Jul 13, 2000
1:02 am

how's everyone doing? enjoying your summer? I hope to be adding some banners and butons soon, so that you can post them to your web pages, or attach them to...
blue-eyes-1012
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Jul 16, 2000
12:32 am

was just playing around, adn came across this...<br><a href=http://wwwtmp.sclero.org/support/caregivers/a-to-z.html...
blue-eyes-1012
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Jul 16, 2000
12:45 am

Hi. I was out of town on business when the movie aired and I forgot to remind my husband to tape it. Does anyone know where I can buy a copy of the...
rpmkayak
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Jul 20, 2000
2:34 am

let me see what i can find out for you......
blue-eyes-1012
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Jul 20, 2000
1:10 pm

Since the movie was shown on ABC and featured The Scleroderma Research Foundation, I'd hoped one of them would offer it for sale, but I don't see it listed on...
alby40
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Jul 21, 2000
12:40 pm

thanks for your help amie.......
blue-eyes-1012
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Jul 21, 2000
1:42 pm

Hi! Please visit my scleroderma website at <a href=http://community.webtv.net/DudleyDelany/EDGARCAYCES1...
dudley_delany
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Jul 22, 2000
6:04 pm

6 months ago, my aunt was diagnosed with scleroderma. and today i found out that my mom's cousin has it too. and there have been 2 more people in my family to ...
sweetness_ghs
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Jul 23, 2000
5:36 am

hi...welcome! hmmm...that's interesting...form what i have read and understand it doesn't seem to be hereditary....ineresting...maybe some of the others know...
blue-eyes-1012
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Jul 23, 2000
1:15 pm

This short article might help explain the difference between "heredity" and "genetic."<br><a href=http://www.ihavescleroderma.com/pages/heredity.htm...
alby40
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Jul 23, 2000
3:39 pm

Sweetness,<br>My sister died 3 years ago with this awful disease, to try and put your mind at ease all the research I have done says it is not hereditry.Hang...
Beanie_1959
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Jul 24, 2000
12:17 pm
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